Monday, October 12, 2015

I love my children, especially Aubrey. I'm loosing the battle on a dog.

I'm softening to the idea of a service dog, but not any time soon:)

This video came across my feed today and Aubrey watched it at least 6 times and kept saying "Aubrey". In any event, service dogs are wonderful and when Aubrey's sisters all move out, she may need one to keep her company. Until then, my kids can keep begging, I guess!

In case you didn't know, Aubrey (and our family) is learning Signed Exact English. It is different from American Sign Language in a few ways. SEE is going to help her better learn to read and write because it follows the written language that we all use. ASL uses less signs to mean the same thing. Here is a video that explains it better than me and uses examples of sentances showing the difference.

Communication can be tough for kids with Down syndrome and many turn to Sign Language to help bridge the gap between needs to communicate and ability to communicate. We were no different in the beginning and fell in love with Signing Time videos.

Once we learned that Aubrey was hearing impaired, we had to move into high gear and learn more since that was going to be her primary means of communication. We took classes at the elementary school and go dictionaries. It was tough. But we had so much help.

I'm impressed with how much she knows sometimes, and how she corrects us. I love that we can communicate without even talking and sometimes it is fun to tell "secrets" with my kids that no one else can hear:)

Her language has improved tremendously and we use both verbal and signing now, but still very much need the signs to get all her wants and needs across sometimes. The challanging part now, is that she is learning faster than we are! I love that her teachers are always sending home sheets of words (so we don't have to look them up) and it helps us learn some of the new words she is getting at school.

For your learning pleasure this week, her spelling list. We knew all of these, but it is always a good review for signs we don't use often.

We have big dreams for our Aubrey! We expect her to be....unique and exciting and beautiful and smart and independent and wonderfully herself. We expect that of all our kids:)

Defining beauty in only one way, is limiting to so many in the world. We are blessed that she is a part of a school where there are lots of unique kids and she is no different than anyone else. Her disabilities don't make her stand out. All the kids at that school are unique and beautiful and special.

Kelle Hampton is a blogger I have followed for years. She blogs about life beauty....and her family....and her daughter who has Down syndrome. Everyday life is just everyday life. She had a blog before her daughter was born and not much has changed. She blogs life. But she also blogs about the change she wants to see in the world for her daughter. She has connected with others and raised money to make a difference for her daughter and others with Down syndrome.

Thursday, October 8, 2015

Keeping Aubrey healthy has been tough. For 2,586 days (7 years and 1 month), that has been our job. Kids with Ds often have weaker immune systems.

Sometimes we struggle with her health and sometimes we do not. Right now we are battling. Which means we have TWO new pieces of equipment at our house.

The pulse ox monitors her oxygen levels, which is ultimately how we know she is getting sick. We monitor her at night. Anything above 90 (red) is good. Anything lower and she gets oxygen, which we also have right now. It's been some sleepless nights monitoring her or fixing the beeps when it doesn't read or she pulls it off. But we like knowing how she's feeling since she can't tell us.

We also have a pulmonary vest. She often uses this when in the hospital and they finally decided we should have one at home. She puts it on. It puffs up with air and we connect hoses that "shakes" her. 10 minutes a session. Supposed to shake the snot out of her or get her coughing. Either way, we've seen some progress since getting it. We hope it is the simple answer to keeping her lungs healthy and clear.

Wednesday, October 7, 2015

Tuesday, October 6, 2015

I feel so blessed that our world has changed in regards to people with any disability. People with Down syndrome are proving every day, all around the world, that they are not only capable of doing what everyone else is doing, but they can do it great!

I came across an article entitled "8 People with Down Syndrome Who Are Making History". The original article is here:
http://www.babble.com/parenting/8-people-with-down-syndrome-who-are-making-history/
(some of the video links don't work, but you can google them)

There is a woman who graduated college with honors. There is a model and an actor and even a politician. All of them have Down syndrome and have achieved more than was thought possible.

The last story really struck me, because kids can be so cruel. I think one of the things I have always worried about is bullying and acceptance for my daughter. Owen's path wasn't without bullying and mean kids, but in the end, the way his team and the other kids at school rallied around him, was amazing!

We should all have that kind of love and support, disability or not. Go out there tomorrow and show love and kindness and support to someone!